For many years, I worked as a Program Coordinator and Family Caregiving Consultant at the Alzheimer's Association and Del Mar Caregiver Resource Center. During that time I wrote a monthly newsletter for families taking care of loved ones with progressive incurable memory loss and dementia. Those articles are now a book, and this blog was created to share it (and any new articles I write) with all of you.

I moved this past month and coincidentally (or not) almost all of my new clients this month have been grappling with issues related to moving. Should I move my mom in with me? Should I move closer to her? Should I be looking for a nursing home or an assisted living facility for my relative? How can I avoid moving my spouse? These are big questions with few simple answers. Moving is stressful even under the best of circumstances but when dementia is part of the picture some kind of change in living arrangement is almost always absolutely necessary as time goes by. This is such a big issue we’ll be looking at various aspects of it over the next few months. I hope it helps sort things out for those of you grappling with this very challenging subject.

The Choice to Keep a Loved One at Home

This is by far the most popular choice, the one most people say they want. And yet, with Alzheimer’s Disease and other progressive dementing illnesses, it is a choice that many people will say is impossible. The Number One complaint I hear from caregivers is that somebody they trusted tried to convince them to place their relative despite their wish to do otherwise. Instead of receiving help in how to keep their relative home they heard “You can’t expect to be able to do this! It’ll kill you!”

Please understand the love and concern behind such a statement. According to the Journal of the American Medical Association (JAMA), in an article printed a few years ago, dementia caregivers over the age of 60 die at a much higher rate than people who are not caregiving. And yet, a new study recently published in the New England Journal of Medicine found that a year after the death of an Alzheimer’s patient, hands-on caregivers were less depressed than those who moved their loved one to a nursing home. Even though taking care of a person with Alzheimer’s Disease is known to be harder on people than taking care of someone with cancer or many other diseases, death appears to bring closure for caregivers while institutionalization can bring guilt and loneliness. In my work with family caregivers I’ve noticed that if the caregiver has enough help to handle the stresses involved, caregiving at home brings the highest sense of satisfaction. There’s the pride and increased self-esteem that comes with the completion of any hard job and relief that the journey is over. Hands-on caregiving also gives the opportunity to heal old wounds or make amends for past behavior.

What you most need to know is that most of the time caring for someone with dementia at home CAN be done and—if you are willing to do whatever it takes—it is often the best solution for all concerned. The key, though, is being willing and able to do whatever it takes.

Are you willing to ask for help?

Are you willing to make changes in your home environment and normal routines?

Are you willing to accept help from wherever it comes (family, friends, neighbors, church members, and community agencies) even if you would prefer that your problems be kept in the family?

Are you willing and able to have care workers in your home 24 hours a day at the very end?

Are you willing to deal with incontinence, difficult behaviors and physical disability for as long as it takes, even 10-15 years?

Most importantly, are you willing to do whatever it takes to take care of yourself so you are able to be a caregiver as long as you desire?

You CAN do this work if it’s your highest heart’s desire. The first caregiver I met through the Alzheimer’s Association was a woman in her 90s who proudly cared for her husband at home until he died. I’ve met caregivers so frail I couldn’t believe they weren’t patients themselves who steadfastly stayed the course. They usually (but not always!) have a patient who is sweet and appreciative, they accept help wherever it comes from, and they know in their hearts, without any doubt, that this work is their highest calling.

Not everyone is so lucky.

Some patients are abusive, keep the family up all night, wander, or have a history of having been so difficult throughout their lives that people who could have helped stay away. If solutions are not found for these problems, home care can become a nightmare.

Some people don’t have family members who can help, refuse to ask assistance of neighbors or friends and can’t or won’t pay for services. Some people have chaotic work schedules, are raising small children, and can’t meet the needs of someone with severe and worsening dementia as time goes on without a lot of help. Some have health problems of their own and others have made choices that make long-term caregiving an impossibility. Then different solutions have to be found.

But let’s assume, for this article, that you’re going to make this choice. What needs to happen to make that successful? The following list of suggestions is the best place to begin no matter what decisions you make about caring for your relative but they are absolutely essential for anyone planning to care for a loved one at home.

1. Find out everything you can about the typical course of the illness or conditions you are grappling with. What are the most likely issues to arise? What is the worst case scenario? What agencies provide services you might need? Where can you get more information?

2. Call a family meeting. Include your patient if they are still capable of making choices and planning for the future. The purpose of the meeting is to educate people about the disease and make sure everyone is on the same page when it comes to what’s coming next. Choices will have to be made about care and who can provide it or pay for it. If your patient will need 24-hour care, eventually, the job will not be possible to do at home if it falls to one or two people alone.

People need to sleep, eat, get plenty of exercise and social contact and have ways to find enjoyment in life. A plan that does not include an adequate night’s sleep and time off for rest and recreation is not a realistic plan. How will the family divide the work or find and hire workers to supplement the work family members do? What community services is the caregiver or patient eligible for? What will your insurance plan cover? What resources do you have to pay for care (rainy day savings, a line of credit or a reverse mortgage on the house, etc.) Is there an extra room for a care worker to spend the night or can family members take turns doing night care duty? Will people need training to handle incontinence, lifting and helping the patient move from a bed to a chair, or managing difficult behaviors? There needs to be a contingency plan made for the worst case scenario.

If you don’t have all the information you need at this first meeting, split up the task of finding the information and schedule more meetings until a plan of action is in place. Expect that the plan will change because the true course of the illness is what will dictate the actions required and that can never be predicted 100% in advance. But at least you will have talked about possible scenarios and will have done the advance planning required to allow your most desired outcome a chance to come true.

3. Based on what was discussed at the family meetings, make any needed appointments with attorneys and/or financial planners. You need to know how to invest or free up money wisely and legal documents need to be written that will allow a person you designate to make necessary decisions for you and your loved one should one or both of you become incapacitated and unable to make decisions for yourself.

4. Learn to let go and share the caregiving with others before you think you “need” to. Your loved one needs to get used to receiving help from others BEFORE a crisis forces such a change to occur. Get in the habit of having time off every week for your own interests. Most people with dementia become very dependent on the person who provides them care. Don’t let that responsibility be yours alone!

5. Make taking care of your own physical and emotional health your highest priority. Forgive me if you’ve heard this before but, as on an airplane, you must put your own oxygen mask on first before attempting to help other people. Create an enjoyable routine that includes adequate rest, exercise, nutritious meals, social contact and recreational activities. If/when caregiving activities start to eat into that time a big red flag should come up for you. Never skimp on these activities except in an emergency and know that an “emergency” that lasts more than a few weeks is not an emergency—it’s time to make a change in how caregiving is done and how much help you need to have.

6. Join a support group either in person or online. You don’t have to tough it out on your own even you have no family or friends nearby. A group of people who understand what you are going through can even be a better source of support than long-time friends who don’t know how to help in exactly the way you need. In a support group you’ll make new friends, share some laughs, maybe even create a caregiving cooperative to spread the work around and lighten the load. And there’s nothing like getting input from a variety of sources for inspiring you with how human creativity can come up with solutions for just about any challenge you may encounter.

7. Keep a notebook with all the information anyone would need to provide care for your loved one inside. List all the medication he or she is taking, what they are for and how and when they need to be taken. Have emergency contacts with social security numbers, Medicare and MediCal information, health insurance numbers and anything else a person filling in for you would need to have in an emergency.

8. Call family and friends regularly and keep them informed of what’s happening. Keep them involved by sharing your concerns and help them help you by planning respite breaks or by accepting their offers to be of assistance in other ways. A home-cooked meal brought over with a loving smile can go a long way when times get rough. Say “yes” when people ask to help and insist that they let you help them.